NeuroScience

[lss]

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others.

 

Kavinace is a amino acid which clams the nervous system.

 

Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier.

 

Lss

[Dedee]

That is awesome! I am so glad you have found something that is helpful. Sounds like an interesting physician. You said he is expensive. Does insurance not pay? It's great to hear of other resources out there. Thanks for sharing!

 

Dedee

[81lumberjack]

Hi,

 

We live in the DFW area. What doctor did you see? Always interested in docs people have good experiences with.

 

Thanks

 

Walt

 

 

 

te='Dec 3 2008, 09:34 AM' post='28481']

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others.

 

Kavinace is a amino acid which clams the nervous system.

 

Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier.

 

Lss

[lss]

Walt,

 

I have been very fortunate in having friends suggest these doctors. Don't know where in DFW you live, and some of them may be a drive for you, but well worth it.

 

We have seen Dr. Johnson - Johnsonmedicalassociates.com

 

There is also ehc.com and Dr. Constantine Kotanis, we have not seen either of them, but I hear they do the same. As for a doctor in Dallas that has actually communicated with Dr. K in Chicago, that would be Dr. Chiniwala who is in the Trinity Hospital building in Carrollton. She had a very open mind about Pandas and had no problem listening to me and my "theories" ordered blood work and prescriptions according to Dr. K in Chicago. She is a pediatric and internal med. dr.

 

Linda

[pmoreno]

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others.

 

Kavinace is a amino acid which clams the nervous system.

 

Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier.

 

Lss

 

Linda, that is amazing - I have been working on this for several weeks now, researching about neurotransmitters, GABA & dopamine in particular. I knew that these things really influenced sleep, mood, OCD like symptoms, anxiety level, etc. I had been waiting for my test kit to arrive and then I've had trouble collecting the test for Gaby because it's very difficult to get that 2nd morning urine (2-3 hrs. after waking and not being able to drink or eat) - First, she had sneaked some toast when I left her in the kitchen for a few minutes by herself, then on another day she just couldn't pee again after having gone when she first got up - its been difficult. I had to keep her home from school to do this, but I'm going to try again on Saturday. I am convinced that I will find that her levels are off, as were your son's. I don't believe the PANDA's can be cured by the kavinace, but it can definitely get rid of the symptoms while we are waiting for their immune system to repair (which can take years). I have heard other people talk about how it keeps everything under control & its almost as if they don't have PANDAS anymore. One thing I have heard, though, is that the kavinace works fine, but when you add the calmPRT, sometimes it can have some odd effects. If the Kavinace works, just go with that - maybe its a good thing you couldn't get the calmPRT. If you really want to add it later, just try the kavinace first for a while and see what happens, then if you add the calmPRT and get some odd results, you'll definitely know they don't work well together. You may remember from some of my earlier posts, I had asked about this because I had thought about the fact that the antibodies compete for receptor sites in the brain and therefore GABA, dopamine and other important neurotransmitters are not able to be utilized. A few people had answered me & one in particular had also used kavinace on her son (I believe several years ago) and it has worked out perfectly. She is the one that mentioned that when she tried the calmPRT along with the K, it made him anxious. I'll see if I can find the posts and what she said specifically. Anyway, I think we've definitely hit on something here. Pat

[pmoreno]

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others.

 

Kavinace is a amino acid which clams the nervous system.

 

Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier.

 

Lss

 

Sorry, I just checked my earlier posting and the mom who had replied mentioned that it was travacor that did not work well with the kavinace - not calmPRT. I don't know much about the calmPRT, but will read up about it and see if it is something that could be helpful along with the kavinace - but I definitely think the kavinace has got to be the answer - am looking forward to getting it for Gaby. Pat

[pmoreno]

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others.

 

Kavinace is a amino acid which clams the nervous system.

 

Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier.

 

Lss

 

Linda, one thing that I'm not quite clear on - maybe if you talk to your MD again, you could ask - I'm surprised that GABA levels and serotonin levels are elevated - I would have expected the opposite because those are the inhibitory neurotransmitters that would seem to control and subdue the anxious, hyper behavior. The kavinace contains ingredients that would promote GABA and serotonin (from what I can tell), so by taking it, it seems that it would cause those levels to go up even more? You did say that his tics are gone now - were there any other behaviors you were concerned about - if so - what were they? Please keep me posted on your child's progress because this is extremely important to me in making a decision for Gaby. Thanks so much, Pat

[lss]

Pat,

 

Aside from the tics, he also had horrible nightmares, and lately he still wakes up in the first hour of his sleep, but just talks about things, example, one night he sat up in bed and said, "i just like it, i really really like it", and or " the one in my room is bigger, and the one in Connors is not so big" and not getting up upset and hitting the ground, crying kind of thing. The biggest change is that the teachers emailed me and said he was more calm and focused at school, more willing and open to suggestions, and his main teacher also mentioned that he was happier at school. I'm not sure how or what the Kavinace does, but I'm sure that is what is helping him. I will tell you that I have heard some tics, but only at night, while he goes to sleep for about 5-10 minutes, but nothing at all like it was before, so I'm thinking that this may be his way of falling off to sleep. I will ask the doctor about the kavinace and also about the levels. I'll let you know what he says. The Neuroscience was the one who suggested we use the kavinace as well as the CalmPRT, Jr. Another interesting thing; the ped doctor had ordered blood work for celiac and it came back negative, however when we did the specific Igg it showed the allergies. I'll have to call her as well and find out what the difference was in testing.

 

Linda

[Worried_Dad]

Hi, all:

 

Just wanted to share that - based on some of the posts here - we ordered a bottle of Kavinace and started our son on it a couple of weeks ago. He's come a long way since IVIG (10 weeks ago), but residual OCD and tics are still a challenge. We were hoping the Kavinace would help moderate these symptoms while he continues to heal.

 

Anyway, we didn't notice as dramatic a change as some others have experienced, but the Kavinace does seem to help. Our son's OCD contamination fears have gotten noticeably milder, and the tics have diminished. They're not gone - still emerge when he's tired in the evening - but better.

 

Thanks to those who posted about Kavinace. It helped!

[ilovedogs]

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others.

 

Kavinace is a amino acid which clams the nervous system.

 

Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier.

 

Lss

 

Sorry, I just checked my earlier posting and the mom who had replied mentioned that it was travacor that did not work well with the kavinace - not calmPRT. I don't know much about the calmPRT, but will read up about it and see if it is something that could be helpful along with the kavinace - but I definitely think the kavinace has got to be the answer - am looking forward to getting it for Gaby. Pat

Yep, that was me! We didn't have success with the Travacor! But, we are still on the Kavinace and have been since back in May. Within 2 days I saw a HUGE reduction in his OCD and some of his tics. We just had a followup visit with his naturopath last week and she's pleased that he's doing well with just one capsule a day. In the beginning we were on 2 capsules a day. She had mentioned that she has some children on 3 a day. I have been experimenting with skipping 1 day a week on the Kavinace to see if it's supporting his system well. I've had no flare ups of the OCD. We've been skipping the past few Sundays(obviously, I picked a low stress day to experiment on) so he was going from Sat. AM to Mon AM before he would take the Kavinace again. Anyway, I hope those of you who try the Kavinace find a benefit from it as we have!

Bonnie

[pmoreno]

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others.

 

Kavinace is a amino acid which clams the nervous system.

 

Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier.

 

Lss

 

Sorry, I just checked my earlier posting and the mom who had replied mentioned that it was travacor that did not work well with the kavinace - not calmPRT. I don't know much about the calmPRT, but will read up about it and see if it is something that could be helpful along with the kavinace - but I definitely think the kavinace has got to be the answer - am looking forward to getting it for Gaby. Pat

Yep, that was me! We didn't have success with the Travacor! But, we are still on the Kavinace and have been since back in May. Within 2 days I saw a HUGE reduction in his OCD and some of his tics. We just had a followup visit with his naturopath last week and she's pleased that he's doing well with just one capsule a day. In the beginning we were on 2 capsules a day. She had mentioned that she has some children on 3 a day. I have been experimenting with skipping 1 day a week on the Kavinace to see if it's supporting his system well. I've had no flare ups of the OCD. We've been skipping the past few Sundays(obviously, I picked a low stress day to experiment on) so he was going from Sat. AM to Mon AM before he would take the Kavinace again. Anyway, I hope those of you who try the Kavinace find a benefit from it as we have!

Bonnie

 

 

Good to hear that you're having continued success with this. I am anxious to try it, but am waiting for my phone consult with DAN doc on Tuesday to go over test results (from neurotransmitter panel & OAT test). Then we'll decide what the next avenue will be. I'm hoping he will agree to let us try it. I imagine that its something that they will take until they outgrow this stuff - puberty? I haven't heard of any real side effects have you? Pat